Six weeks on

As usual when doing anything under general anaesthetic, the hospital required that I eat nothing for the previous 6 hours, then only water until 2 hours prior to the scheduled start, then nothing at all. Which is OK if everything runs to plan. But of course, “The best laid schemes o’ mice an’ men, Gang aft a-gley”.

In this case, the patient prior to me on my surgeons list was having a seriously bad day. So by the time the surgical team had sorted them out, we started a lot later than expected. C’est la vie, these things happen, and if it were me on the table when things went wrong I’d not want the surgical team worrying about when they needed to start on the next guy.

But it did mean that by the time I got down to the operating theatre it was more like 5 hours since I’d last had anything to drink, and I was quite seriously dehydrated. Which meant the poor anaesthetist had no chance of cannulating me in the back of the hand, as the veins had all gone into hiding. He tried. And tried again. And then suggested using a vein in my neck (which I veto’d!) before finally finding a vein in my arm.

By this time, feeling somewhat like a pin-cushion, it was a pleasant relief to get some fentanol, before drifting gently off on a wave of propofol. And then on what felt like my next breath I was wide awake in the recovery suite. Mightily impressive. I can heartily recommend the members of the Portsmouth Anaesthetic Group – they do a particularly fine job!

The surgeon tells me that he managed to dilate the join in my colon without any issues at all, and that from now on I simply need to maintain this until such time as we reverse my ileostomy. Without going into unnecessary detail, this requires that I carry out a rather unusual (well, to me anyway) procedure once a week or so.

The other news however, is that he also carried out a flexible sigmoidoscopy to examine the abscess in more detail. The result of that is that the abscess is now very well defined, and draining freely, with plenty of granulation tissue. However, there is still no real sign of the healing moving on to the next phase inside the abscess itself. Which is very frustrating.

The surgeon feels that because the contraction of the joint is itself a healing response, and is happening so close to the abscess, we should certainly give things more time. And since I now have a lot of time and effort invested in this treatment, he would be inclined to give me as long as necessary for us to be convinced that there really is no healing going to happen before we take the decision to move me to the colostomy.

So, the current plan is for me to have monthly reviews with the surgeon, and in 3 months time to do another full imaging work up and then take a decision on what to do next. But realistically, unless we see some real progress soon, that decision is really just going to be setting the date for the colostomy operation.

So between now and then I really need to start preparing myself for a very major operation, just in case. The expectation is that that operation will take several months for me to recover from, so my view is that I need to get myself into the best possible health now so that I have the best surgical outcome possible, and recover as quickly and as well as possible. Assuming the worst case for making the decision, and the best case to schedule the operation, I would expect that to be some 5 months away. So being practical, and discounting Christmas, maybe February or March.

And if by some (increasingly small?) chance I don’t need the colostomy then at least I’ll be in great shape for spring and summer 2013!

Another progress update

I saw my surgeon last Thursday.

The MRI scan and Gastrografin x-rays show that my abscess is now much better defined. There are no longer any tracks leading off it, and it appears to conform closely to the shape of the endosponges that we were using to drain it. In addition, the content of the abscess is now felt to be much “simpler”; so probably containing less (no?) infection.

However, the join in my bowel that the abscess is connected to has started to contract. This is positive because it’s a healing response, which is what we are trying to achieve. However, it’s also negative because if left unchecked it would ultimately close off my bowel completely. So, it’s good to see the healing, but unfortunately it’s in the wrong place, and will need to be countered.

To do that I’m going to be pulled back into hospital for another small operation under general anaesthetic on Friday of this week. The surgeon will expand the join in the bowel (essentially “stretching” it) and make sure that the opening into the abscess from the join is still sufficiently large to allow the abscess to easily drain, and so remain infection-free. I suspect they will also either remove or replace the stent in my kidney, as the existing one is now at the end of it’s life.

The surgeon feels that I ought to be OK to go home that night, and then should be OK to go back to work on Tuesday after the Bank Holiday weekend, though I may feel “a bit under the weather” during the weekend itself.

After that procedure, the surgeon will then be able to ensure the join in my bowel remains correctly open as I attend his normal outpatient clinic. Which doesn’t sound exactly pleasant, but does at least mean there would be no need for any more general anaesthetics. Which has to be a good thing.

Progress update

It’s been a long time since I last posted an update, and that has provoked a few concerned emails and phone calls. So apologies for the lack of news, but as usual, it’s down to a combination of there not being much to report and normal life getting in the way, rather than anything more sinister.

After my last post back on the 16th of July, I spent a week working from home and in my local IBM office. Or rather, I spent a week trying to work. In practice I wasn’t able to maintain concentration and kept (literally) falling asleep. On the two days I went into the office I didn’t even manage half a day of real work. By the end of the week it was clear that I wasn’t coping.

I talked to the hospital about my difficulties in getting back to normal, and they were unsurprised (and hence relatively unconcerned) given the cumulative effect of the many anaesthetics and the enforced inactivity that my treatment had forced on me. Their expectation was that I would steadily return to normal with more time. So my manager and I agreed that I would take another couple of weeks to predominantly recuperate, and just dip into work as I felt able.

And that seems to have done the trick, as I’m now feeling much more my normal self, and this week have resumed a relatively normal working schedule.

In addition, as planned, my consultant called me back into hospital for an MRI scan and another gastrografin test to determine how successful my treatment has been. The MRI scan seemed to be another extended scan (some 35 minutes long) with no immediate feedback available from the operations staff. However, the gastrografin test was run by the radiologist who opened up my abscess at the start of my last series of treatments, and he was happy to show me the images that he’d collected, and give me his first (very informal) impressions, which were that the abscess looks to be much better defined, with no sign of any of the traces that used to run away from it. Which could be positive. Or could just be optimistic.

Ultimately I’ll refrain from any premature celebrations, and wait for the detailed interpretation of the MRI and gastrografin together. I see my consultant on the 16th to hear the result of that interpretation, and what that means for me next. Fingers crossed that it’s positive, and that all the investment in this last round of treatment has paid off.

In parallel to that I also had a call from my urologist, as it’s nearly six months since my left kidney was stented. Which means, as the stent only has a six month life, that he needs to see me again to discuss what to do next; do we take the stent out, or replace it with a new one? So I’ve booked my consultation with him on the 28th, by which time I will have seen my lead consultant on the 16th, and hopefully have a clear plan in place for what needs to be done next.

Final sponge removal

I’ve been meaning to post this for the last week, but somehow I’ve just not really managed to get around to it. On Tuesday last week the surgeon removed all the sponges; that was my twelfth general anesthetic in 34 days, and as with sponge change #9, the anesthetist had a devil of a job cannulating me. My veins need a rest.

And fundamentally that is a large part of the reason for stopping the treatment at this point. This last months treatments have clearly made a big difference; we’ve finally managed to fully map the extent of the abscess, we’ve fully drained it, and managed to promote the growth of granulation tissue in the wound. All things that we’d not really managed before. But it was all at a cost to me.

The constant need for procedures under general anesthetic, being permanently connected to the vacuum drains, and consequently being closely tied to hospital were all wearing me out. Psychologically, if not physically too, I needed a break.

And so the surgeon is now planning to let me get back to normal life again, have a rest from the intensive treatments, and see if I can continue to heal normally without the vacuum therapy. We can resume the vacuum therapy later if I need it, but his hope is that I can continue to slowly but steadily heal without it.

So my next step is to get back to a normal life again, and in particular to get back to work. There are a few logistical challenges associated with that, thanks to the removal of the vacuum drains, so for the first week or so I suspect I’m going to be restricted to working from home. And my surgeon is already talking about arranging another full radiology workup to more accurately assess how well this treatment has worked, and more importantly decide what steps we need to take next. But tomorrow I officially restart work.

Which sadly means I have to tackle the mountain of email that has built up during my months absence from work. Fun.

Sponge change #9

The writing of this has been rather delayed; nothing serious behind that, just the normal things in life getting in the way. Which actually, is no bad thing!

I was due in surgery shortly after 8am on Saturday, so my wife dropped me at the hospital at 7am, which required a rather grimly early start to the day. However, once in the hospital, things moved along smoothly, and as far as I can tell, I was the only person in the theatre suite at that time. Which if nothing else, pretty much guaranteed me lots of attention.

As usual, there is a degree of paperwork, and checking of paperwork, and rechecking of paperwork. After all, its embarrassing if they do the wrong operation on you, so they go to some considerable lengths to ensure that that can’t happen.

But I eventually made it into the operating theatre, hopped up on the table, and passed an arm to the anesthetist. Who had a jolly good go at putting a cannula into the back of my hand. Before giving up, and swapping to the other hand. Which after another really good go, proved equally obstinate. It seems that the combination of all my chemotherapy, and my recent fairly intensive use of cannulas has resulted in my veins becoming basically all tapped out.

The anesthetist was very apologetic; clearly it’s no fun for either him or I to have to spend time digging around for a workable vein. Apparently the problem is not getting the needle into the vein. That’s fairly simple. The problem is that for some reason (that no-ones very clear on) the vein then goes into some sort of spasm around the cannula, preventing any blood flow, and completely preventing it from working. The effect is pronounced in very elderly patients, people with certain classes of arterial disease, intravenous drug users, and people like me, who have been heavily cannulated.

In the end we gave up, and popped one into a bigger vein further up the arm. You end up getting pretty blase about such things. And then it was off to sleep again.

I came around in recovery clear-headed, so I suspect no use of the muscle relaxants this time, and so was soon back on my way up to my room, getting there around 10:30am. A nice cup of tea later, a short snooze, and around midday my parents picked me up (since by then my wife was helping out at my daughters school Summer Fete) and dropped me back at home.

A follow-up call from my surgeon indicates that things are now going better again, but that he still plans to go ahead and remove all the sponges on Tuesday (ie, tomorrow!), with a view to running some radiology studies, to determine the extent of the healing. At that point it’s highly likely that I’ll then be switched back to healing without the vacuum assistance, which in many ways will be a huge relief, as it will give me an opportunity to get back to a much more normal life again, at least for a while.

Which will be great, as even though I’m back at home most of the time, this really is getting very wearing now.

The grubby question of money

As most of you will be aware, much of this treatment is being funded by my corporate medical health cover. And they (initially Standard Life, since taken over by Prudential Health) have been simply amazing in terms of their helpfulness, and stoic support for my treatment.

This is probably helped by the size of the IBM account, and the fact that in general most IBMers probably tend to live reasonably healthy lives. I’ve invoked my health insurance only twice in 26 years, once for one of my family, and now for me. So in general I suspect they can afford to be fairly generous and still turn a healthy profit (no pun intended).

But one has to assume that even so, they must have a department of accountants looking at the numbers somewhere, and asking their medical advisers to report if this treatment regime represents good use of their money. In short, are they getting a good bang for their buck? And given how cutting-edge some of this treatment now is, that’s got to be a difficult question for them to answer.

My experience of accountants leads me to expect that kind of response to not be well-received.

So it’s good to see that (a) we’re starting to get results that indicate that the (probably significant amounts of) money spent over the last few weeks is actually resulting in healing, (b) that the costs should be reducing somewhat (now that there is no need for me to be staying as an inpatient in hospital), and (c) that there may well be an end in sight for this phase of treatment (if the abscess heals).

I really hope those facts will help to assuage any of the accountants fears. Because I must admit to considerable fears of my own that at some point the insurance company might decide to simply pull the plug on this.

Sponge change #8 epilogue

I knew if I blogged, the phone would ring. And it did.

The surgeon tells me that where the sponges are, there are signs that the wound is pulling in around them, and possibly knitting. Apparently getting the sponges back out was difficult. This probably explains the need for the muscle relaxant in the mix of drugs.

He’s not clear on how localised this effect is, so it may not be providing the kind of closure of the wound that we need. But he thinks its promising enough that we should continue on this path for a little longer and see whats actually happening.

The plan is therefore to see what results he gets from two more sessions with these new sponges; the one that I had today, and another change on Saturday. He’s then going to take the sponges out on (probably) Tuesday of next week, and then accurately map and measure the cavity (probably with another gastrografin study) to see if it’s starting to actually heal properly.

At that point we’ll have the evidence to prove the effectiveness (or not) of what we are doing, and can make a plan on how to best move forward at that point.

Which sounds sufficiently positive that I’m going to have a glass of wine.

Sponge change #8

Today was the eighth sponge change. Also my eleventh general anesthetic since the start of June. It’s also the first change since my surgeon switched the regime around to use his radically modified endosponges, and realistically it’s the first opportunity for the surgeon to see if that is having a significant effect or not.

I ended up first on his surgical list, which is both good and bad. Good, because it means I don’t have to be awake while I’m fasting, but not so good because I have to be in the hospital at 7am. That represents a bit of a challenge while we’re also trying to get kids to school, and it also means I won’t get any immediate feedback until he’s finished off the rest of his list for the day.

So I went back into hospital late last night, which made the logistics work, at the expense of not being able to sleep in my own bed, and (I expect) adding a bit more to the bill. And then I promptly had one of those nights where I fell instantly asleep. At least six or seven times. So by the time morning came around it was a relief to have to get up and get ready for theatre. At that stage of the game I was much less worried about the state of my dressings (since they were all about to be replaced) so I started the day with an indulgently long soak in the shower, before a shave and a fresh pair of TED stockings & gown.

I figure I may as well at least face the surgeon and his staff looking my best!

I met my anesthetist first, who was a lovely chap that I’ve not met before, who I suspect was a decade or so older than me. We ended up having a really nice chat about places we’d each visited on business in the States, while we went through the standard checklist, and discussed what was being done to me, and what anesthetics he was going to use on me.

And then it was down to theatre, and through the usual routine of a cannula in a vein in the back of the hand (right hand this time, because my left is covered with needle holes and bruises, and generally rather sore) got attached to various machines, put an oxygen mask on, and drifted off to sleep on a wave of intravenous drugs.

I do remember coming around in the recovery room this time, and chatting with the recovery staff, including a couple of whom I recognised from previous occasions. But interestingly that memory is already becoming fuzzy and indistinct. Welcome to the effects of midazolam, which the anesthetist had mentioned that they were going to use in the mix today. And then it was back up to my room, where once they’d established that my vital signs were all normal, and that I could eat and drink and wee (this seems to be the holy trinity as far as getting released from hospital is concerned) I was allowed to come home again.

And the outcome of the procedure? I don’t know yet.

My surgeon had to finish his list, and is going to ring me tonight once he gets home to talk to me about how I’m doing. So I guess I will know more later tonight. However, I’m quietly telling myself that the fact that he’s replaced the existing modified sponges with two more must be reasonably positive news. Because I suspect if it wasn’t working to at least some degree, he would have simply discontinued the treatment.

I hope.

Saturday

Yesterday I got to go home for the day.

Sounds simple, but it took me three attempts just to get dressed, trying various methods of threading tubes and vacuum bottles through different articles of clothing before I managed to find something that actually worked. Kind of amusing really; an interactive sartorial jigsaw. No wonder you see so many people leaving hospital in jogging pants and a sweat shirt.

But by the time I’d finished I was exhausted, which was far less amusing.

The doctors always warn you when you go through surgery that it puts your body under a lot of stress, and that it takes a surprising amount of time to fully recover from all the drugs and get back to normal strength and stamina. What I’d not fully appreciated (largely because I’ve been living out of a single room for the last three weeks) is that I’ve been going through procedures every three days that while not true “operations”, still have most of their characteristics, especially all the drugs. Consequently I’d really not noticed how much it has been affecting me. But fundamentally I’m worn out.

So in the end while it was great to get home and spend time with my family and try to do some of the normal things that everyone takes for granted, it also revealed both that this can’t go on indefinitely, and I’m going to need to take some time off at the end of this to get my strength back. Which wasn’t something I was expecting. Fortunately I have quite a lot of vacation set aside, and I think this could be a good time to think about using some of it.

The day itself?

We did nothing special, and normal family life went on around me. Some requests for help with laptops and smartphones, a bicycle that needed fixing, and a nice home-cooked dinner. Which actually was just what I needed before being dropped back into hospital last night, ready for todays procedure.

No rest for the wicked, eh?!

The new plan

Hopefully the new plan is “as cunning as a fox what used to be Professor of Cunning at Oxford University but has moved on and is now working for the U.N. at the High Commission of International Cunning Planning”.

My surgeon has emailed the manufacturer of the Endosponges for some additional technical support, and any information on new developments that they might have in the pipeline that could he helpful in my case.

In the meantime he spent some time today disassembling a couple of Endosponges, and working out how to modify them to make them a lot smaller. He also tested them out to see how much suction they are actually generating, and apparently it’s not very much. Which normally is essential, as too much suction can cause serious problems too, but in my specific case is somewhat problematic.

So, the subtle and cunning plan is to make a couple of much smaller Endosponges by radically cutting them down, and then embedding them back into the abscess again. He’s then going to turn up the suction to try to counteract the inflexibility of the rear wall of the abscess, while also packing the lumen of the bowel to help to press the abscess closed, potentially using yet another endosponge for that.

The hope is that this will allow the cavity to be pulled tightly together around the cut-down endosponges (as would normally be the case) allowing the wound surfaces to start to knit together and the abscess to close up.

The intention is to do this on Sunday morning, and his feeling is that if we see signs of the wound surfaces knitting together at the change after that, on Wednesday afternoon, then it will be worth considering continuing with the vacuum treatment. If on the other hand there is no sign of any change in the cavity then we should discontinue the endosponges, and see if my body will respond better to simply being left to its own devices again for a time.

Meanwhile the trigger for deciding if I need to switch to the colostomy remains the urological problems I was experiencing. If they return then that will ultimately force our hand, and dictate that I accept the permanent colostomy.

Meanwhile he’s recommending that I try to spend the day out of the hospital tomorrow, and if that is successful, that we try to get me home on the days and nights between the operations on Sunday and Wednesday. Which will be great, because there really is no place like home, especially when you’re not feeling well.